Hi, I was wondering if anyone else had been diagnosed with Cutaneous T cell lymphoma ? My husband has been recently diagnosed with this, we have been told it is rare and that he will have chop chemo and if that puts him in remission he will need stem cell therapy. I would like to know if anyone else has this horrible thing and what the outlook is ?
1 Like
Hi @Joanna9396, a warm welcome to the forum and thank you for your comment. I’m sorry to hear of your husband’s recent diagnosis- may I ask how you’re both coping? I’m sure you’ll find others on here will welcome you with open arms, and please do also remember that we have a support line which you’d be very welcome to call if you need some support or wish to chat anything through at all (0808 2080 888).
It’s possible that you’ve seen this already, but our colleagues at Lymphoma Action have information on cutaneous T cell lymphoma, which you can access here- Lymphoma Action | Skin (cutaneous) T-cell lymphoma (lymphoma-action.org.uk). They do have a section on outlook, which is dependent on multiple factors and varies depending on the individual- your husband’s treatment team will be best-placed to talk your husband through this based on his individual circumstances, but hopefully you’ll find the webpages useful.
Do take care and keep reaching out, Joanna.
Best wishes,
Tanya.
2 Likes
Hi @Joanna9396 and welcome to the forum! I haven’t got any medical knowledge where Lymphona is concerned but many of us on this forum have related blood cancers and have had similar experiences as a result. Tanya has given you a good steer of the way forward but if you just need to have an outlet for your feelings then this is the place to come. I hope that you and your husband are ok and are coming to terms with your news. You’ll find that the people in your life that matter will be there for you in expected ways. Let us know how you get on.
1 Like
Hi @Joanna9396 and I am so glad that you have found us.
@TanyaBloodCancerUK has given you good hints.
I am also wondering how you are both doing?
You must be in fear and shock from your husband’s diagnosis, I know I was when I was diagnosed with another blood cancer.
It sounds as if your husband’s consultant has a treatment plan in place and as for a prognosis we are all very special, unique people with individual medical histories so that is a question for your husband’s consultant.
You have entered a universe that speaks another language so do ask questions and ensure that you understand the response.
The main thing that I would say to you is to look after yourselves and be kind to yourselves.
Please keep posting how you are both getting on.
1 Like
Hi @Joanna9396 I have been thinking of you and I wondered how you are now?
Look after yourself
Hi and I hope you’re both doing ok. I was diagnosed with CTC Lymphoma/ Mycosis Fungoides April 2016 after 5 years of unexplained rash. Since then I’ve had 112 sessions over 2 years of Phototherapy, just over 2 years of oral immunotherapy (Bexarotene), 6 months of self injecting Interferon and mountains of moisturising creams & fasting blood tests. Treatments have helped keep things under control but have all been stopped due to adverse reactions. Unfortunately I haven’t tolerated treatments well overall but many people do, and it has helped, the support from all clinicians has been tremendous. I’m considering TSEB (Total skin electron beam) therapy but 6 years on I’m currently feeling well and enjoying a treatment break. Very best wishes, if I can help I’ll do so gladly.
2 Likes
Hi @Karen1 a great big welcome and I am sure your experiences will be really helpful.
Just reading you post it sounds as if you have had a probably very isolated, scary and exhausting 6 - 11 yrs. It must be so hard not tolerating treatments well, medically but also emotionally, but as you say what must have helped so much is the support of your clinicians, they do sound tremendous.
Please do let us know what you decide with the Total Skin Electron Beam therapy.
I look forward to hearing more about you.
I am so glad that you are currently feeling well, go out and have fun and adventures.
Inbox if you need a chat. Hope your okay, remember your not alone.
1 Like
Thanks so much for your supportive post @Karen1. Really glad you are enjoying a well deserved break from treatment.
Take care
Gemma
1 Like